CMN Champions Celebration - Day 3, Part One

TJ’s Children’s Miracle Network Trip – Day 3, Part 1 of 2
Hello again. Today is going to be a full day. TJ’s day started early. He and I had to do a radio interview with a radio station from back home in Omaha, KXKT-The Kat 103.7. Linda and Kaitlyn slept in. We get to the hallway where the media is set up and there must be 30-40 radio stations there. Most of them were doing their morning drive show shows from here. We met Gina (and her husband) and Craig from the Kat’s morning team. Very nice people and they made TJ and I feel pretty comfortable. Allyssa from the Omaha Children’s Hospital Foundation was also here in Orlando and got to talk to her between interviews. We met a lot of people right off just going down the row of radio stations doing interviews. The first interview was with Mary Lou Retton. She honestly isn’t that much taller than TJ. Mary Lou is going to be the keynote speaker for the general session this morning. Then TJ and I did our interview which I think went very well. TJ was still a little tired and quiet but took direction well and even got to say hello to his class and his first grade teacher Mrs. Malone. He is going to get razzed because he didn’t say hello to his grandparents who were listening back in Omaha. Then we got to meet John Schneider and Steve Young for their interviews. And then Mark Wills, a country artist who was very personable came to do his interview and wanted TJ involved. He has got a great way with kids and got TJ to talk a little and smile a lot. Gave TJ an autographed CD and picture. TJ and Mark will be doing another interview together on Tuesday w/ KXKT again from Washington. Mark is also emceeing the awards portion of the keynote session and told TJ that when TJ came out he was going to hold his hand as high as he could and TJ was to jump and give him five. I did get pictures of TJ with all of them and also some autographs and will try to post them.
The next event was the opening session. All of the Champions and their families were situated in a ballroom next to the main ballroom and we watched the meeting on a large screen. In the other room were representatives from all of the sponsors talking about all that the CMN does, fundraising plans and long term plans for the future. Mary Lou gave a great motivational speech about what got her the gold in gymnastics at the ’84 Olympics and also her reason for being involved with the CMN for over 20 years. We then left all of the Champions and went to the main ballroom for the Awards Presentation to the Champions. I don’t know what expectations I had going into this bit I know I didn’t think I would get this emotional. It was hard seeing kid after kid get introduced and know what kind of turmoil and stresses they and their families have gone through. Going through what we did with TJ really gave us a lot of empathy with the other families. The kids did so well going across the stage, getting hugs from Miss America and Mark Wills and getting their award medals around their neck and turning and waving to the crowd. Linda said TJ looked so cute, I thought he looked like a stud. He showed no sign of any nervousness…it was a huge stage to walk across all by yourself, with a huge audience, tons of lights, loud music and multiple TV cameras and his image projected on large screens. He did great. And yes, Mark held his hand high and TJ did a great jump to give him a high five. All of this would be very intimidating to me and I do this for a living. It really was a very moving experience. The ceremony ended with a parade of all of the champions across the stage. I wish you all could meet these kids. I’m hoping we at least get a DVD of the awards portion of the ceremony. It is one of those moments in life you would watch over and over again.

It is still so hard to believe we are here...and also what brought us to this point. It is hard to begin to tell you how special all of this is. I just don't know to begin to thanks anyone and everyone for all of this experience not only for myself but for the memories for TJ, Kaitlyn and Linda.
The rest of the day was free time – Our first time available to go to Disney World – I will post part two later. Tim

CMN Champions Celebration - Day 2

TJ’s Children’s Miracle Network Trip – Day 2
Hello all, Today was a very full day. We all slept pretty hard last night. I did get up at 6:00am, got a shower and took a walk around the resort. It was still dark and very peaceful. The fountains were all off but their lights were still on. It was very nice out and no breeze. Woke up Linda and it took forever to get the kids up. We had to be at a get together breakfast by 8:00am. The resort has huge meeting rooms and exhibit halls that would put the Qwest Convention Center to shame. The breakfast was in a junior ballroom that had a stage, two large screens, light trees and huge CMN banners around. They introduced representatives from Walmart/Sams Cluband the Foresters Insurance Co. who are huge sponsors of the CMN Celebration. Many thanks to them. After that John Schneider (of Dukes of Hazard and Smallville fame) talked about why he helped co-found CMN 26 years ago. Mark Wills, a country music star was also working the crowd as well as Miss America 2009, Katie Stamm . Kaitlyn just had to have her picture taken with her, TJ would have nothing to do with that. The breakfast ended with a grand entrance of Disney Characters including, Mickey, Minnie, Donald Duck and Goofy. We did get a few pictures of the kids with some of them. I also enjoyed watching the younger kids respond to them. It was a great breakfast and a good way to start meeting other Champions and their families. You really do have an unspoken but fully understood bond with them.
The rest of the morning and early afternoon are designated as free time. The kids just wanted to swim…and that they did. The weather is just beautiful and at this point I started to think about being back in Omaha, that I should be working. I just felt guilty. It feels so weird to not be wearing a beeper. I have had a beeper on me for one job or another for over 30 years now. It still feels so surreal to be here. But it is great to see the kids having a blast. Linda even had her first margarita @ 10;30am. Linda and the kids ate poolside while I went back to the room and finished writing the blog for yesterday and trying to convert some of the video files from my HD camera so I can add them to the blog. Unfortunately, I just brought a netbook and it doesn’t have the processor power to do all of that. The kids have been shooting their own video with a flip camera and will try to see if that will work. Otherwise I will have to wait till we get back home to add video files to the blog. Pictures will have to do for now. About 2:00 we convinced (which took a lot of convincing, believe me) the kids to take a nap because we knew it was going to be a very busy night. We all actually slept till 4:30 (and Kaitlyn could have slept much more) and had to rush to get to the dinner @ 5:00pm. The dinner was in the same room as breakfast. At his time, kids from other states started making the rounds of the tables and swapping things representing their states. One thing I forgot to mention was in addition to kids representing all of the states in the US, there were also 12 kids from Canada, 3 from the UK, 1 from Ireland and one from Australia. The kid from Australia, Conor , has an amazing story and we had a good time talking to his mother. We were lucky because our Children’s Hospital and Medical Center in Omaha was nice enough to supply us with pins with their new logo to represent Nebraska. Both TJ and Kaitlyn got some neat pins, cards, candy and many other things from the other kids. The neat thing is the kids starting autographing the other bio books that CMN handed out to each family. It was fun to watch them do all of this. It was a great icebreaker. All of the Champions and their families were then moved to this huge exhibit hall where tables were set up with placards with the kids name and their home state. Then there was a parade of hundreds of the sponsors that make it all possible. This event is designed as a way for the sponsors to meet the kids and share pins and even some neat necklaces. It was amazing to talk to them and they talked about any connection they may have had with Nebraska, or because of what they had read about TJ, and about his love of the Green Bay Packers. The other thing that was smart was that early last fall in correspondences with CMN considering TJ’s selection we were asked to submit TJ’s autograph. From that a stamp was made and all TJ had to do was stamp his”autograph” in the sponsors books. He is looking forward to taking it to school and using it on the papers he turns in, He will have to discuss this with his teacher. It was actually smart, otherwise we would have been there till midnight . Actually, the whole event took 2 hours (but it didn’t feel like it)and we still didn’t get to see everyone.
At this point, we were once again moved to yet another larger ballroom and as the Champions came into the room as a parade they were multiple cameras putting them on two large screens and to lots of cheers and applause we were led to the front of the room and got great seats. The first part of the event was hosted by Steve Young, retired quarterback of the San Francisco 49ers. He did a great job of a skit with Jim Hensen’s Pajanimals. The kids were invited on stage and it was pretty cute. Steve ended his segment by saying that they got official confirmation from the White House that we do get a full tour of the White House and we do get to meet President Obama next Tuesday the 24th. It was always on the itinerary but was always subject to change. Then a great video was shown on the earlier mentioned Conor from Australia and a report done on him by their version of 60 Minutes. Then the event concluded with a concert by Julianne Hough of Dancing with the Stars and a great country artist. Very pretty I might add. TJ shot a lot of the concert with his flip video…not sure how that turned out but he was very determined to shoot what he could. With each song, the kids kept moving closer to the stage and Kaitlyn and TJ ended up sitting on stage by the end of the concert.. TJ even got to dance with Miss America. He didn’t want to put she forced him and I think he actually loved it. I would and I HATE to dance. It is almost 1:00am as I write this and the kids and Linda are sleeping very soundly. Tomorrow is going to be another busy day. We are going to need a vacation when we get back home. Tim

CMN Champions Celebration - Day 1

TJ’s Children’s Miracle Network Trip – Day 1
Today started a little like any other day. We got the kids up at the normal time they would for school. I had gotten up earlier and did some setups at a hotel. Grandma Carol took us to the Airport where the kids were amazed that we ran into three different people we knew and spent time talking to them. This is the first plane ride for the kids. The plane had 4 seats straight across and each kid got a window seat. TJ stared out the window as we were taking off in total amazement with no sign of fear. Kaitlyn on the other hand did the “sign of the cross” a half dozen times, was full of apprehension and hugged Linda as the plane started down the runway. If anybody needs pictures of flying above the clouds, ask TJ because he has hundreds. We changed planes in Atlanta and met up with three other Miracle Network Kids. The t-shirts sent out to the kids ahead of time really help. The plane to Orlando had TV’s at each seat and kept the kids entertained. Having a live GPS map and statistics that we were flying at 33,800 feet and traveling at 585mph and that the outside temperature was -63 F made a huge impression on Kaitlyn. She also watched the countdown and we hit the runway with 6 seconds left on the timer. When you exit the plane you can feel the change in temperature and humidity. Very warm and appealing. At the Airport we were met with a whole contingent of people from the Network welcoming us and guiding us to the buses to the resort. As you take the bus ride and enter Disney World you really enter another world. Everything is clean, and the landscaping throughout is manicured. Words cannot describe how huge this place is. All of the CMN events and our rooms are at the Coronado Springs resort. http://disneyworld.disney.go.com/resorts/coronado-springs-resort/
Once we got to the resort we were greeted by other CMN people. One of the banners hanging outside of the convention rooms had a picture of TJ on it. The kids were given a goodie bag and Linda and I got updated agenda/itineraries and keys to our room. We got to our room by way of meandering walkways, past multiple fountains and courtyards. Throughout the property we kept running into other Champions and their families. The kids wanted to go swimming so we went to one of the four swimming pools here, all outdoor. It was massive and designed with a Mayan temple as a centerpiece with a waterfall coming down the steps. There is also an 180ft. waterslide that the kids loved. They swam until just after 8:00pm. Even though the sun had set 90 minutes earlier it was still very warm with just a light breeze but it was well lit. It felt like an August night back home in Nebraska…except that we didn’t have the high humidity and no bugs but here it is March. The kids were amazed to once again see green grass. We then went to dinner at a restaurant here that has islands of multiple styles of foods all made to order. That was the first real food the kids had gotten since bagels at breakfast and airline peanuts. Got back to our room about 9:30 and the kids laid down and literally died. It was just 8:30pm in Omaha and the kids were asleep. That hasn’t happened in years. All in all, a great day. TJ even refers to our hotel room as home. End of day one. Tim
PS: One of the reasons this is so long is I want to be able to archive this for TJ. As he grows up and realizes how lucky he is to be with us, this log will help to tell the story of his (and our) little “Miracle”.

Hello again, Here are some additional pictures from the Walmart kickoff. These were all shot by my sister and TJ's aunt Ann. Thanks, Ann

How our Kickoff @ Wal-Mart went - 3/13/09

Friday ended up being a very interesting and full day for the kids. They went to school in the morning and we picked them up at noon. We had been called earlier in the week to do a quick interview with Jason Glenn from the Bellevue Leader to do a story on TJ's CMN selection. We stopped at the Leader's office on our way to the Bellevue Walmart. The Leader was interested primarily because of the aspect that the Bellevue Walmart had sold the largest number of the CMN balloons and that is why the kickoff celebration was to be at their Walmart. Not sure when a story will run but we will watch out for it. In between all of this, we did a phone interview with Michael O' Connor with the Omaha World-Herald. We got to the Walmart a little early and found the area for the announcement pretty easily. It was in the wide aisle area between the registers and the clothing. The area was decorated with balloons with the CMN colors. A large banner with TJ's picture was hung behind two draped tables. And to the left of the tables was a flipchart stand with a great poster welcoming everybody to the celebration and a copy of TJ's picture from Children's Hospitals "Visions" magazine. Somebody or somebodies spent a lot of time creating it. A very festive atmosphere. As we approached the table we were met warmly by Chris, the Walmart manager. Cherie Lytle from Children's joined us and as we were talking, I noticed the kids were gone..I had assumed that they had wandered off. In actuality, Chris had taken the kids to the bike area and informed the kids that they had their choice of bikes. The next thing I knew, the kids were walking toward us with huge beaming smiles walking their new bikes. A total surprise and just the start. As we got closer to the start time of 2:30pm, more and more people collectively showed up and started grouping around the tables. Cake arrived and media people started setting up their cameras. Some of our family members came. Kaitlyn and TJ's grandparents, Ernie and Carol, aunts Kathy and Ann as well as their cousin (whom they totally adore) Hannah. Jane and Alyssa from Children's Foundation arrived as wwll. I was surprised and pleased to see one of TJ's favorite Doctor, Dr. Jeff DeMare come He brought his wife, Carmen and their adorable two kids. It was touching to watch them with TJ...especially when Andrew asked for TJ's autograph on his picture. The kids also gave TJ a Children's Hospital T-Shirt with the new Hospital and Medical Center logo to wear on his trip. Another big surprise was to see one of our favorite nurses from TJ's stay in the PICU, "Supernova Kim". Even though we had not seen her since TJ got out, she will always have a warm spot in our hearts (along with countless others @ Children's). Numerous Walmart associates started grouping together and the announcement was started by Chris, the store manager. He talked about Walmart's relationship with the Children's Miracle Network...They raised over 15 million last year, and $460 million in 21 years for the CMN. All this with sale of the paper balloons. Amazing. Jane Phillips from the Children's Hospital Foundation then spoke about Children's and TJ's selection as Nebraska's Champion. Then Chris introduced the top seller of balloons from their store (and unfortunately I didn't get her name) who in turn surprised the kids with a $500 gift card from Walmart. It was obvious to all that she was very affected by all of this. I was pretty touched. At this point, I was introduced...and almost from the start I almost lost it. I had TJ in front of me and had my arms on his chest...and all my thoughts went out of my head. Usually, I can talk in front of a group like this, but even after a year, it's hard to talk about what TJ went through... so needless to say (and fortunately for everyone else) I didn't talk long. Going into this, I wasn't sure what to expect but it was a very nice announcement. We got to spend time afterwards taking many pictures and talking to everyone...although most of the Walmart associates went right back to work. It is embarrassing in a way all of the attention. The kids getting the bikes and the gift card's were TOTALLY unnecessary. We have talked it out...and we will be getting things for the kids school, St. Stephens and also talking to what the child life specialist's needs are @ Children's. That evening we watched the coverage on the local news and woke up this morning to a nice story on TJ in the Omaha World-Herald. http://www.omaha.com/index.php?u_page=2798&u_sid=10586445 It is going to be hard to thank each and every person involved with all of this. Here are some of the pictures. I don't have pictures of all of us with the Walmart associates on this camera...I will have to get them from other people who had cameras there. Have a great weekend. Tim

Today Starts a new Adventure

Today is the start of an adventure not only for TJ but for his sister Kaitlyn, Linda and myself. I'm not sure who all is going to read this but what i mean by adventure is that we are in for a trip of a lifetime. TJ, who is now 7 years old was chosen by Omaha's Children's Hospital and Medical Center to be Nebraska's 2009 Children's Miracle Network Champion. What this entails is that this afternoon, TJ will be given a sendoff for our trip at a press conference at the Wal-Mart in Bellevue, NE. Wal-Mart is a national sponsor of the Children's Miracle Network and all across the country similar ceremonies will be held for all of the other state champions. We will meet all of them in Orlando next week. The trip starts next Wednesday, March 18th and continues through the 25th. More on the trip later.

For those of you that don't know, maybe I should start at the beginning at what brought us to this point. It was almost a year ago already but it seems like just last month to me...except in slow motion. Last April 9th, a Wednesday, was supposed to be just another day. The kids had both been suffering from the flu off and on for a week or so. They would get better, go back to school and get sick again. TJ came down with it again on Tuesday the 8th and stayed home again. All day long he just had the dry heaves. He woke Linda up @ 4:00am on the 9th and said his "heart hurt". We attributed it to that he may have pulled muscle in his chest from his vomiting. But as it turns out...that was not the case. He saw his then pediatrician @ 11:30 that day and was sent home to get fluids and bed rest. She too thought that he had pulled some muscles in his chest. I know that this story is getting long and I do apologize. I wrote about this in much detail on a Caring Bridge website / journal that I kept during TJ's hospitalization and recovery. Here is the link: http://www.caringbridge.org/visit/tjpfannenstiel If you have a lot of time to kill you can read all that TJ went through. OK, to tell a long story short. We ended up at Children's emergency room late at night. TJ was in a lot of pain and distress and he ended up having a cardiac arrest right in front of us. They started CPR, rushed him upstairs to the Pediatric Intensive Care Unit (PICU) and put him on a ventilator...at this point we were told to leave him, not knowing we wouldn't get to see him for another 5 hours or so. During this time, Linda and I were all alone in a darkened waiting room with TJ just on the other side of that wall. Every 15 minutes or so they kept coming out and telling us that they were still doing CPR. I know, I too didn't think that CPR could be effective for that long but with a body TJ's size, that his ribs still aren't hard cartilage and with the help of the ventilator and an experienced Dr. performing the chest compressions all that time and with monitors telling them that yes, he was getting good oxygenated blood all the way down to his toes, it does work completely. Simultaneously, a decision was made by the on-call cardiologist to call in the ECMO team. The ECMO is a specialized type of a heart/lung machine and was TJ's only hope for survival. They put TJ on the ECMO which entailed cutting into the side of his hip and groin and inserting multiple tubes going up and down the major arteries in his body all while CPR was still being performed on his chest. At the same time, I started calling my family and Linda's family and they all started gathering at the hospital, again all of this in the middle of the night. Even Fr. Jim Tiegs, our parish priest from St. Stephens was with us through the night. We got to see TJ just before daybreak. It was a very hard sight to see...but oh so good to at least touch him again even though he was unconscious and would be for many more days to come. In the coming days we learned a lot of what was done on TJ's behalf and we can't even begin to thank the countless doctors, nurses, technicians and all of the rest of the staff at Children's. Many became friends. Dr's. DeMare, Hammel, Fletcher, Kadlac, Duncan, Erickson, Gumbiner, and Mysore all come to mind. Sheila, the EKG/Echo tech, Kim (who I called Supernova Kim) and Ashley and many other nurses in the PICU, Kathy Greco and the rest of the nursing staff in the cardiac/cath lab area, as well as Cherie Lytle in Marketing and Media Relations and Alyssa, Jane and Roger with the Children's hospital foundation all have supported us through all of this. Many thanks also to the perfusionists that ran the ECMO machine, especially to Kim who spent a lot of time answering all of our questions and to Randy who came from Nashville and was with us all five days TJ was on ECMO. They all feel like family. My family stepped in to help with Kaitlyn through these days. My dad, Ernie and mom, Carol were the first one to the hospital that night and halped with Kaitlyn a lot in addition to my sisters Kathy and Ann. My brothers Troy and Terry helped with a lot of the jobs so we could keep our business going. Linda's family also rushed to our side(Susie joined us that night as well) and although many of them live out of town they made the trip to Omaha many times to see TJ and support us. Even her sister Charlene from Denver got to Omaha within 9 hours after that late night call. I can't also forget our neighbor's Jim and Lyn Bohan and their daughter Melissa who is Kaitlyn's true BFF. They have been there through thick and thin and helped with Kaitlyn and kept her attitude up through all of this. Our customers have also been a great support through this...not only sticking with us and understanding our time commitments were to be with TJ during his hospitalization but also the many calls and e-mails of support. Many of our customers we have been with for years and they too feel like family. Last of all, I have to thank the St, Stephens church and school community. People came out of the woodwork and asked how to help. TJ's kindergarten teacher, Mrs. Keller was always very concerned how TJ was doing and visited often in addition to Dr. Dave Peters, St, Stephens principal, who coincidentally had a son who had a heart transplant and can empathise with the hospital experience. Mary Ann Maier, St. Stephens administrative coordinator always has an eye out for TJ. Mary Ann and her husband Jeff are also neighbor's and have become good friends and helped give us a good experience in Green Bay last November. Even TJ's first grade teacher ths year, Mrs Malone has been great support for TJ. this year. NEVER, EVER discount the power of prayer to help make TJ's recovery as complete and fast as it was...thus the miracle part of TJ's story. Although I have recounted TJ's story many times when talking to family and friends...I haven't written a word about all of this since last May. You have probably all heard about movie stars when talking about how they get emotional and can cry on command they say that they think of sad times in their lives. I was never really able to relate to that because I could never just cry on command...But our experience with TJ has changed all of that for me. All I have to do is just think how close we came to losing him, watching what his little beat up body went through and it just tears me up. Those of you that really know me know that I am not an emotional, huggy person. But even now when I think of those first few days of TJ @ Children's I get all teary eyed and a huge lump gets in my throat. Even earlier tonight, after we got the kids to bed, Linda and I were watching an episode of ER (something I haven't had time to watch in many years) and in it they talked about a heart patient on ECMO, the same kind of heart lung machine that TJ was on @ Children's and I really had a hard time hearing that all again.



Here it is, 3:00 in the morning and I keep writing. I have never written a blog before, although the Caring Bridge site was a little like a blog (and a lot like therapy for me) we have been asked by the Children's Miracle Network to do this to spread the good news of what the Network and it's sponsors and supporters do for the Children's hospitals across the nation. I will do my best to keep writing and will add pictures and even videos throughout the trip. I will write about how today's ceremony went @ Wal-Mart and relate more details about the trip in my next post.